MaryAnn Harris has been in the hospital since September 6, 2021. She is recovering from Powassan virus, an extremely rare tick-bourne illness, but is still dependent on a ventilator to breathe, and paralyzed except for a toe. In order to make a full recovery and go home (which her doctor believes is possible), she needs significantly more therapy than the Canadian healthcare system can provide. In addition, due to the severity and long term nature of her condition, Charles & MaryAnn will start being assessed a co-pay for MaryAnn’s room and board that could be as high as $4k per month, an impossible figure at this time. Charles & MaryAnn have spent their lives reaching out to all of us through words and music and conversation and acts of kindness, through their creativity and heart, their generous spirits, and their dedication to putting light out into the world. Together we can help build the resources needed to help MaryAnn make a full recovery and to bring her home. Thank you.
THE FULL STORY:
On September 6, 2021 MaryAnn got sick. Really sick. Double vision, nausea, extreme fatigue. A trip to the Emergency Room ended with a transfer first to the Neurological Unit and then to the ICU, where they got her stabilized, though “she looked like something out of a Geiger painting…with all the tubes.” She couldn’t open her eyes, couldn’t speak, couldn’t move more than a toe. She was intubated and put on a ventilator. They ran every test – blood, MRI, CT scan, and more – and tried every antibiotic but couldn’t identify a cause other than a virus of some sort. Eventually, they performed a tracheostomy so that MaryAnn could be extubated, but her breathing was still supported by a ventilator. There’s some dispute between the parties, but for a couple of weeks, MaryAnn was either unconscious, unable to respond, or in a coma, depending on who you talk to, and the situation appeared dire. The working theory was that she was suffering from brain stem encephalitis.
On October 18th, six weeks after entering the hospital, one of MaryAnn’s tests came back positive for Powassan. Powassan virus is an extremely rare tick-borne virus that, though spread is increasing now due to climate change, has only about 150 confirmed cases, most in the Northeastern and Great Lakes regions of the U.S. and in Ontario and Quebec provinces of Canada. There’s no cure, not even really a care protocol, since Powassan can affect people differently. Powassan virus can cause infection of the brain (encephalitis) or the membranes around the brain and spinal cord (meningitis). Mortality rate for those with a severe reaction is 10%, but approximately 50% of those who survive severe disease have long-term health problems. In extreme cases, like MaryAnn’s, mechanical ventilation is necessary to prevent respiratory failure.
Weeks in the ICU turned into months. Each day had its ups and downs, but there were small improvements over time: faint but deliberate foot movements; blinking; eyes open, though still not tracking; mouthing a word; being able to participate in hand, arm, and leg exercises…
…and finally, on November 22, MaryAnn’s trach tube was swapped for a smaller version, and her first voice box was installed, allowing her to say a few quiet words. It had been almost three months since Charles had heard her voice.
The holidays passed in a blur of COVID lockdowns and limited visiting hours, while MaryAnn tested her ability to breathe on her own for an hour or two here and there and continued with her exercises, with daily help from Charles and her family, especially her sister Lynn and niece Kmoré during the weeks Charles was down with the flu. She was able to spend a little time in her chair each day, important for building lung and diaphragm muscles. But, critically, she was and is unable to breathe without the ventilator or move unassisted, except to flex a toe, due to the paralysis brought on by the encephalitis, and she still suffers from double vision and blurry eyesight. Her paralysis extends to her neck and head, which is turned to the right and tilted slightly down. Her eyes still don’t track, so she can only see things directly in her very limited line of sight, including people entering her room. She can’t look up to see the clock to check the time, or check the date on the calendar on the wall, or look at flowers in a vase on her bedside table.
The hospital transferred MaryAnn to the NACU (Neurological Acute Care Unit) at the end of December, but serious desaturation episodes eventually forced her back to the ICU, this time without the use of her voice as they tried to stabilize her breathing and oxygen levels. Over the next couple months it was one step forward and two steps back as MaryAnn dealt with significant congestion, painful swelling in her arm and hand, chronic back and arm pain, severe desaturation episodes that required emergency intervention, fluid in her lungs, infections around her tubes, low blood pressure, and the understandable depression and anxiety that one might expect from her situation. Equally heart-wrenching, periods of delusion set in and grew common, some benign (a little grey cat that wandered her room) and some terrifying or crushingly sad. Unfortunately, though less scary and less frequent, the delusions continue even today.
On April 20, 2022, eight months after being admitted to the ICU, MaryAnn was transferred to St. Vincent’s, a Complex Continuing Care hospital for patients who are dependent on others to complete the activities of daily living. In MaryAnn’s case, she was also a candidate for transfer due to her continuing dependency on having a ventilator for breathing. Moving to St. Vincent’s has been incredibly beneficial, as they have a whole team of specialists dedicated to helping improve MaryAnn’s health and recovery, rather than simply keeping her alive. Her doctor is wonderful, constantly going above and beyond in his efforts and attention, and the rest of the team – respiratory specialists, occupational therapy specialists, speech therapist, physiotherapist, rehab assistants, and some incredibly kind and caring nurses – are doing their best to keep her comfortable and to help her improve over time.
Unfortunately, her sense of displacement (feeling that she’s somewhere else) and lingering delusions continue and have been joined by frequent severe headaches. She is still unable to breathe on her own consistently, though she’s improved enough to speak all the time now (and has even made some phone calls to friends and family!) She’s not able to move or turn her head without help.
More unfortunately, she’s reached the stage of care where intense and frequent interventional therapies are critical to continuing her recovery. Charles and Lynn have spoken with other Powassan survivors in Ottawa, as well as with doctors and specialists, and they are all absolutely consistent in their advice. It’s quite simple: in order to improve, in order to go home, MaryAnn needs much more therapy – of all kinds, and much more frequently – than the Canadian healthcare system can or will provide.
In addition, the last 11 months have been exceptionally rough for Charles. As you might imagine, it’s hard for him to write, and without MaryAnn – his first reader, editor, business manager, and partner – it’s extremely challenging for him to publish new work. Learning this past week that they would likely start being assessed a co-pay for MaryAnn’s room and board that could be as high as $4k per month…well, honestly, that would turn this lean and difficult time into an impossible time.
That’s where we come in.
If you’ve read this far, you know what Charles and MaryAnn mean to our community and to each of us, friends, family, and fans. You know they’ve spent their lives reaching out to all of us through words and music and conversation and acts of kindness, through their creativity and heart, their generous spirits, and their dedication to putting light out into the world. I have no doubt that we, together, can help lighten their load and shine a light back to them as they tread this long and dimly lit road.
Please, contribute what you can here. Check out Charles’ long-awaited and much-requested Patreon. Buy a book, download a tune, leave a review. Share their story, raise awareness, reach out to your own communities.
And MaryAnn and Charles asked me to include the following: "If you've been adversely affected by COVID, or anything else for that matter, please just send your best wishes, which we will treasure with all of our hearts."
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